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by Julia Roberts

Joy through special needs

January 27, 2011 in Featured, From Julia by Julia Roberts

The week my daughter was born I had a lot of sadness. I also had greater joy because I was celebrating her birth! A welcomed and loved addition or our little family, I sent an email to friends the day after we got home from the hospital. I said something about welcoming our beautiful daughter into the world. I mentioned her amazing eyes, her long finger and toes and I said how happy we were she joined our family. In the second paragraph I told everyone who loved us about her failing kidneys and said we were sad about that but we needed for people to celebrate her life.

I think, without knowing it, I set up how I wanted to embrace the joys of this new life of parenting kids with special needs before the sadness.

Is the sadness still there? Yes. But are the joys I have sweeter? Probably.

When we asked the community to share their joys I realized that there was a similar theme. We all shared in the miraculous joys of daily mundane (not to us) events like walking and eating. We have and continue to celebrate the milestones our children with special needs. We particularly like typical events like siblings who play and learn from each other, when our kids make friends and when they laugh and smile.

We like to see our children thrive and have pride. Milestones come in many forms. One mom said she got to witness her son learn how to open his eyes – fused since birth – and thought, “Who else gets that privilege?” One mom said, “I once heard that when you have a child with special needs, you don’t just celebrate milestones, you celebrate “inchstones.”

Five or more years ago that I realized I do love to witness the little things (milestones especially) and I was (am) probably even smug about that fact. I reason that my challenges should at least afford me the opportunity to have something over my friends who have children with typical development. I probably should feel bad but I do not.

You know what? I watch my daughter jump up in the air about 4 inches on both feet. That alone probably does not seem that spectacular but it took her nearly 3 years of trying. Therapy. Falling. Frustration. Laughing. When my son, who struggles with confidence, is even a little bit proud of himself, even just a tad, I feel joy. Immense joy.

I’m not afraid to admit the struggles we face make the joys in our life sweeter; sweeter than those of you with typical families.

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Avatar of Admin Dawn

by Admin Dawn

Emotionally Handicapped Kids Challenged at School

September 14, 2010 in Special Needs News by Admin Dawn

At times, the anger in the boy’s face seems to ooze from his pores.

At other times, it simply bursts forth in a torrent.

For a child just 5 years old, it’s a form of communication, teachers and experts say — a way of expressing frustration and uncertainty and the simple notion that there’s a lot going on in the child’s life that he or she doesn’t understand and doesn’t like.

For the boy in Carolyn Kendall’s kindergarten class at Indianapolis Public School 61, his means of communication have been explosive: In the first month of school, he’s hit three teachers, knocked over two chairs, thrown a crayon across the room and been a vital player in a brief kindergarten playground fight.

During a series of emotional outbursts, he’s screamed loud enough to be heard throughout the kindergarten and first-grade wing. He’s required the attention of a crisis intervention team (yes, there is such a thing in elementary school). And he’s known all too well by the principal, the school social worker, the mental health therapists and teachers from other parts of the school who have happened upon his periodic meltdowns.

Read the rest of the story here: IndyStar.com | Indianapolis news, community, business, sports, yellow pages and classifieds. Serving Central Indiana..

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by Dr. Tiffany Showalter

What frustrates me?

September 8, 2010 in Ask the Occupational Therapist, Insider Insight by Dr. Tiffany Showalter

As someone who works with children with special needs on a daily basis, I can only imagine how difficult it is to have a child or children at home with these needs. Doing everything you can for your child and keeping sanity in your house must be extremely difficult, resulting in many frustrations of your own. What I want to discuss are my frustrations from the other side, in an attempt to help you as the parent understand where we are coming from.Frustration

1. I enjoy frequent communication with you about your child and enjoy even more trying to help you problem solve an issue your child might be having at home or at school. What frustrates me is when I put forth great effort to help you with suggestions and activities for you to do at home and find out later that you haven’t even tried any of them and are still asking for help.

2. What frustrates me is when a parent expects me to fix their child. You have a wonderful child with both strengths and weaknesses. My role as your child’s therapist is to help your child participate and be successful with completing certain skills that they are having difficulty doing within his/her abilities. It is like the saying; “there is more than one way to get a job done”. In many cases, my job is to find that other way.

3. I know parents are often not experts when it comes to child development and developmental milestones. I can help you there and provide tables. What frustrates me is when you are expecting skills beyond your child’s developmental level. A simple web search can yield what is appropriate or ask me for that information…I am happy to provide you with it.

4. As a parent of one child with another one on the way, I am sure there will be many days when I compare my girls. What frustrates me is when you compare the skills of one child to the next. Even if your children were the same age, had the same abilities and disabilities, and participated in the same programs, there are still countless factors that contribute to your child’s development. It is unfair to compare them.

5. I haven’t had to deal with developmental pediatricians or other medical personnel explaining my child’s diagnosis to me, but what frustrates me is when I have to explain something essential to your child’s prognosis with you when you should have been made aware long before ever meeting me. For example, I have had to explain tone at least 4 times this school year. These were all situations where the children were receiving ongoing medical interventions to address such tone. The parents asked me what we could do to “fix” the tone. I am writing an article on tone itself but in a nut shell here it is. Tone is neurological and can only be permanently “fixed” with surgery or medicines. Various techniques including tendon tapping, casting, icing, vibration, and gentle rocking to mention a few can only temporarily affect tone. More appropriately would be to modify the task that the tone is impacting to increase your child’s success. In two of these four conversations, the parent was brought to tears in learning this information. I think knowledge is power and am happy to provide you with such, but how frustrating that the doctor did not explain this to you. I would cry too.

Just letting off a little steam! I really do love my job!

Disclaimer: I hope you enjoyed reading this article. Please remember you are reading this information of your own free will and are taking the information at your own risk. The author is the legal copyright holder of this material it may not be used, reprinted, or published without my written consent. This information is for entertainment and informational purposes only and is not intended to provide or circumvent medical, legal or other professional advice.

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by Admin Dawn

Kevin Michael Connolly: Staring Back

September 1, 2010 in Future Glimpse by Admin Dawn

Kevin Michael Connolly is a world-traveler, a scholar, a photographer an author and a world-class athlete. He was also born without legs. We spoke with Kevin about the ways his parents inspired him, how athletics helped his confidence and why he doesn’t consider himself an inspiration.

Double Take turns the tables on people who are looking at you. As a child, how did you come to terms with the staring? Was it a process? How did your parents help you handle it?

I would say that I was reasonably fortunate that I grew up in small town, and after my first few years around the community, the staring subsided as the novelty died off. Even as a small child, I enjoyed being the center of attention – and with how normally my parents treated me growing up, I never really came to understand that being stared at could be a “bad thing.” It wasn’t even until I was out of the country and on my own that I began to realize the level of frustration that it could sometimes cause.

In the third chapter of the book, my Mom introduces a very simple game to me called “What If”, in which she posed a series of hypothetical scenarios, and it was my job to try and figure out what to do in any given situation. I think it was this early exercise that helped with my problem solving skills, as well as my ability to deal with the stares later on in life.

You were a silver medalist in the 2007 Winter X-Games. How did your athleticism growing up contribute to your self-esteem?

I also received a bronze in this year’s X Games! I think that just like anyone growing up, athleticism allowed me to find something that I was good at outside of school and team sports. I think that everyone – especially at a young age – needs to have at least one thing they feel they are good at. It’s what helps you define yourself at a young age – and I think it was that early sense of personal definition that helped give me a confidence in my teenage years.

You mention (in other interviews) your frustration with being pegged as “an inspiration” or “heroic” because of your physical challenges. How does this perception from others hinder you? How have you learned to separate how others see you from how you see yourself?

Yeah, I’ve really made an effort to make that separation, and I think that through the writing and publishing of Double Take, I have largely come to terms with that distinction. I think they main issue that I take with the “heroic” and “inspirational” labels is that it sometimes comes across as another, slightly more positive way, of calling someone disabled. Having been born without legs, I’ve never known any sense of contrast or ‘loss’, and as a result it feels like a bit of a misnomer to labeled as an inspiration for simply existing. One thing I talk about in the book is this idea that the dualism of “disabled” and “abled” doesn’t really exist. Instead, I believe that it is more of a fluid, moment-to-moment spectrum that is largely dependent on our ability to carry out an action at any given time.

For instance – when I’m carrying my board and camera up a big flight of stairs in Ukraine, I could be considered disabled because I’m less able than those around me to complete the given activity. However, when I’m passing those same people a minute later on my skateboard – thus performing more efficiently than they – is it really fair to leave on such a label. I think that any static labels – whether its ‘disabled’, ‘inspirational’, or ‘heroic’ – are really for me. I prefer the more practical – ‘no legs.’ Simple, practical, and no false expectations!

People have a tendency, too, to infantalize both children and adults who have a visible or apparent disability. How can parents help their children to confront this and challenge it?

My Dad would probably say “make sure to give ‘em a kick in the ass” and I don’t know if I would disagree. I think that the best thing my parents did from a very young age was challenge me both physically and intellectually. Between my Dad’s hiking trips and wrestling matches, and my Mom’s games of causality – I was forced to grapple with, and compensate for many of my physical shortcomings from a young age. My parents were always present in my life, but very adamant that I figure things out for myself. Whether it was hopping onto a countertop or hiking my way through a forest – my folks always thought it would be best if I figured it out. I think that sort of a self-sufficiency is probably the most important thing to drill into someone at a young age. That, and being proud of your independence – so that when someone questions it, you can give them a kick in the ass.

You can see more of Kevin’s work at his flickr page. You can also read his blog and follow him on twitter. We’ll leave you with one of the videos from his YouTube channel showing you what it’s like to get through a crowded city on his skateboard.


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by Julia Roberts

Featured Blogger: Meet Janis of Sneak Peek at Me

June 25, 2010 in Around the Web, Latest Articles by Julia Roberts

We discovered Janis’s blog, Sneak Peek at Me, via her Twitter and immediately became fans of her friendly, generous tone and her terrific pictures. We knew she was all over the online special needs community connecting people and speaking out about the joys and challenges of raising a child with special needs. Her son, Austin, is 2.5 and is clinically diagnosed with Branchio-Oto-Renal (Melnick-Fraser) syndrome and has several complex medical needs. You can read more about him here.

Can you provide the basics about yourself?

I’m a single mom born & raised in Los Angeles. After graduating from college I spent some time living in NYC, Guadalajara, MX and eventually Dallas, TX – where Austin was born. Before having Austin I focused full time on my career as an Office Manager, those skills have served me well in dealing with Austin’s medical care. I can coordinate the heck out of his doctors. (I think I might scare them just a little bit.)

Can you tell us when you started blogging? And what was the focus in the beginning?

I officially started my blog just over a year ago in May 2009. I started writing regularly in 2007, during my pregnancy on a website for pregnant women, then I moved to email updates. I sent out a mass emails to family and friends with pictures etc. Finally I decided to put all the info and pics in one spot, it made more sense for people to come to me. My blog was basically started on a whim. But it was the best decision I made, I’ve met so many wonderful people through our blog.

Tell us about Austin, how is he doing?

Right now Austin is stable *knock on wood*. The good news he hasn’t needed surgery for over two years, but that is about to end. This summer he will be having his first major craniofacial surgery. This will be the first real “crisis” I’ve ever had to blog through and I am still trying to figure out how I will balance his privacy and the public’s curiosity throughout his recovery.

What is the best thing about blogging about your son and your journey? And what is your worst?

The best thing about blogging about Austin’s journey is that I can help bring awareness to others about the issues faced by families dealing with Special Needs. Hopefully that will eventually lead to a wider understanding and acceptance for those with Special Needs. The worst part of blogging is worrying about people thinking that I am exploiting my child. Also there is that worry about how he will feel about this 10, 20 years from now and feel about his every move being broadcast to the world.

What’s your biggest challenge with raising a son with special needs?

My biggest challenge…wow I feel like I have so many big challenges. Probably two biggest challenges are related and they are the financial strain and the fact that I am a single parent. Those two things would still be present even without Austin’s medical needs, but knowing that I carry the entire show alone is a struggle.

You recently wrote an excellent post on acceptance and tolerance …tell us why.

I recently wrote a post about our visit to a local barnyard petting zoo. Let me preface this by saying that during most of the year my son only leaves the house to visit family or go to the doctor. During the summer I tend to let my guard down about germs and their carries (other kids) and we do more stuff outdoors. This was our first summer outing to the petting zoo. He had a blast, but it was apparent that he was an “attraction” for the other kids. I noticed that parents were either oblivious to it or saw it and chose to ignore it. When I got home I wrote that post our of frustration. Before I hit Publish I reflected on how this could be used as a teaching moment. Once I got that perspective I was able to reword it and add some helpful links & resources. So far it has been well received by the mom blogging community and for that I am grateful.

You write for other sites, please provide links so we can share them with our community.

I also contribute to 5 Minutes for Special Needs Moms,  Complex Child, ShePosts and last but not least Kidz.

Besides special needs tell us what else you are an advocate for?

I’m also an advocate for breast cancer research, as my grandmother died 11 years ago from breast cancer. But generally my focus these days is on topics surrounding families affected by special medical needs and rare disease diagnoses.

What do you do for fun?

Before Austin was born I had an entire room devoted to my scrapbooking hobby, but that activity has been seriously curtailed in the past two years. Now I collect scrapbooking supplies! ;) In my spare time I enjoy reading…books, fiction mostly. I also spend a lot of time with my family.

Please tell us anything else you’d like to share with our readers.

While the content and focus of our blog is awareness and acceptance of medical issues, I would love for people to understand that through all of that Austin is a fairly typical toddler and we do have fun. It’s not all gloom and doom every day….just maybe every other day. ;) Oh also I tend to use some humor to get through tough situations.

We hope you will check out Janice’s blog and see what an uplifting and entertaining resource it is. We thank her for being our first featured blogger in our Around the Web series! Do you know a blogger or have a blog you’d like to see featured? Contact us!

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by Dr. Tiffany Showalter

Generating a little self-esteem

June 15, 2010 in Ask the Behaviorist, Insider Insight, Latest Articles by Dr. Tiffany Showalter

Children often have a difficult time when it comes to self-confidence regardless of whether they have a disability or not. Add in a disability and his/her frustration with self-worth may become even greater. Parents, teachers, and therapists need to take into consideration how important it is to promote a healthy self-esteem in these children and to encourage positive feelings of self-worth in a child.

You are unique and special

Do not ignore a child’s problems, but focus your energy on your child’s strengths. Make time each week to focus on things your child enjoys and is successful in doing. Research indicates that the presence of at least one caring adult helps a child become resilient. Make your child feel appreciated and special.

Learn to cope

Problem solving skills and self-esteem go “hand in hand”. Help your child learn to come up with solutions to his/her problems and role play some of those situations. By working together to find the solution, you are fostering increased self-esteem.

Be mindful of what you say

Be positive with what you say to your child. Instead of saying, “ You need to work harder,” try saying, “We need to find a better way to help you learn.”

Show you care

Try to be empathetic rather than judgmental. Children with disabilities often hear about what they can’t do, focus on their strengths and listen to how they feel about what they are going through.

Provide choices

Avoid power struggles by giving choices for completing activities. For example, suggest different places where they can complete homework…school or home. Allow your child to pick out his/her own clothes. Giving choices to your child helps him/her feel as if he/she has some control over making decisions.

Don’t compare your children

We all come into this world with different strengths and weaknesses, regardless of whether we have a disability or not. Therefore no two people are alike. Studies on twins even suggest that there are differences. So, remember it is unfair to compare!

Play up the positive

Children with disabilities often feel they cannot do anything right. Try to make a big deal about any strength your child shows. For example, if your child likes art, make positive comments, hang up pictures, and show off to others in front of your child to reinforce that you are proud of your child.

Give your child the chance to help someone else

Many children have fun helping others. Let your child raise money for a good cause, help a family member sweep the sidewalk, take the mail indoors for a neighbor, or get involved in other charitable work.

Teaching your children how to understand themselves and how to have a healthy self-esteem is so important. They need to feel accepted and feel as if they are contributing to their hoe and school in a positive way. Make sure that your child is not alone in his/her struggles. Many child struggle at school and parents and teachers need to show these children that they are here to provide support.

Reference:
Self esteem & stress management. Retrieved Feb 12, 2008

Tips for developing healthy self-esteem in your child. Retrieved Feb 12, 2008

Disclaimer: I hope you enjoyed reading this article. Please remember you are reading this information of your own free will and are taking the information at your own risk. The author is the legal copyright holder of this material it may not be used, reprinted, or published without my written consent. This information is for entertainment and informational purposes only and is not intended to provide or circumvent medical, legal or other professional advice.

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by Julia Roberts

Sign to me, baby! Giveaway

June 14, 2010 in Giveaways by Julia Roberts

Clapping KidsThere was a lot of talk about speech delays last week and so we wanted to focus on a giveaway for parents who want to start working with their kiddos on signing. The Special Needs Store offered up a DVD, Signing Time, Series 1, Volume 1, My First Signs.

We did simple signs with our kids when there were babies because their delays were global. The word “global” sure means that exactly. For our son, who started speech therapy when he was 18 months, signing was a way to ease frustration. Within a few weeks he had a few signs with the most important being “more.”

He used “more” for nearly everything in his life. Food, play, even for one of us carrying him around because he always wanted MORE, instead less (he never really took to the sign “less”). We used signing with our girl too, but she did find her words sooner than our boy. The word eat, more and momma where her favorites!

Here’s the information on the Signing Times, Vol. 1 DVD. If I had a little one, I would go for this giveaway because we were making our sign language up as we went along!

Go and check out the other items at Kelly store! Thanks Kelly, love your store. Visit The Special Needs Store!

If you’d like a chance to get your (signing) hands on this, just leave a comment by Saturday, June 19th at 5pm PST! You can even just say “I want it!” and we’ll pick a winner.

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